Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.About 33,000 Americans are currently disabled as a result of this rare neurological disorder.Not one person with TM will ever know their prognosis.I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. Yeah...life sucks, but I still rock.

10.06.2008

Transverse Myelitis: Here we go...very, very slowly

My super-duper-long-time-time friend and 24/7 virtual doctor, Marni, asked for daily updates. I may or may not be giving dailies, but since long restful nights of sleep are out of the question right now, Neuro Detour is the new landing pad for occasionally self-indulgent ramblings of rare disease and common sentiment.

A Little History…

Despite the fact that I was a dancer, my body has always invited unusual experiences--hit by a car, car jacked at knifepoint, flat-face-lip-scarring-fall in Germany, cellulite, you know, the norm.

This past labor day weekend, after purchasing a gorgeous turquoise Helmut Lang jacket at 70% off from my favorite boutique, Joan Shepp, I was strolling by the haute and happening weekenders basking in the sun at Rittenhouse Square and strange things started happening to my body—weakness, pain, tingling, loss of bodily control, etc (I'll spare you all the details).

Needless to say I was freaked out and in the following week I saw a new rheumatologist, my nephrologist, and my urologist. (Are you thinking: HYPOCHONDRIAC. I certainly have, but over my past four health-insured years, I actually have been legitimately diagnosed with a slew of less rare diseases for which I’m under ongoing care.) I was certain that amongst them and my goofy body there'd be a reasonable explanation, an adjustment of my meds and diet, and whaaala, back to "normal."

Not quite.

All suspected MS, and implored me to see a neurologist. Though upsetting, I wasn't too distraught (at least that's how I remember it now), because MS is so treatable today that many newly diagnosed people leave mostly normal lives. By my last doc appointment on Friday, I was amply convinced that a little further exploration might take a few hours away from my benign social life, but I wasn’t about to spend the rest of my life pissing myself in public (oops…there’s that little detail I said I’d spare you), so I walked myself over to 219 N Broad Street to take the plunge, so to speak.

Dragging One Foot Forward…

As crazy moon-star-jupiter-alternate-galaxy alignment luck would descend upon me, Dr. Schwartzman, the chair of neurology at Drexel with an irreverent sense of humor that so matches mine had a cancellation for the forthcoming Thursday (otherwise, the wait would have been through '09). I had an MRI with Gad contrast of my head and spine the day before and dragged my scared, weak, right leg into his office.

Within 1 hour of Q&A, pricks, pokes, and other clincial examinations, Dr. Schwartzman diagnosed me with transverse myelitis (without really telling me what it is), a rare neurological disease most often caused by autoimmune disease, and arranged for me to be admitted to Hahnemann Hospital for “3” days (Dr. Schwartzman’s interpretation of numbers is very different from the rest of the world’s) that Monday (which turned into 6 days) for IV Solumedrol, a steroid treatment, and more tests, including a spinal tap, to get a complete diagnosis.

No big deal right? That’s the impression I got. One week on steroid drip, two weeks on steroid taper, and I’d be back with a bladder armed to let everything else loose on the dance floor.

Mom to the rescue. Mom flew in that Monday morning, suitcase packed with sappy foreign films and Beaches (who watches foreign films or Beaches in a hospital?!), extended her flight twice as they kept extending my stay, slept with my cats, as well as my aunt Marci (who made a surprise visit from Montreal and picked up the cutest, comfiest Victoria Secret pajamas for me to wear in the hospital) in my little studio apartment, tolerated my ‘roid rage, and did her best to get some cute residents in my room...for both our benefit...to no avail.

Although I'm not claustrophobic or prone to anxiety, when asked this important question prior to my MRI, I did answer yes because they give you Ativan, a beautifully mind-numbing, pain-forgetting narcotic, which I willingly intravenously accepted. After 4 days, my concerned mother, who was always sneaking peeks at my chart during rounds, saw NO MORE ATIVAN written even more boldly than that next to my name.

It was good while it lasted.

Out of Dodge...

I've been out of the hospital since last Saturday, and my recovery has been slow. I'm still on high
doses of steroids, which my guy friends think have made me cuter ("less gaunt" in the face is a compliment I guess).
I just see a puffball, but carefully applied bronzer is a magical mask. And I take narcotics designed for neurological pain, which help a little bit, but not much, and with the steroids, I don't even get to experience the narcotic high.

Bummer.

Mobility is not my strength right now. The right side of my body doesn't work very well. I walk with a cane that I punked out with a studded belt, and I can't walk for long. Think 10-minute blocks rather than 10-minute miles. So I'm sticking to my 2-block radius for now, which happens to be the best 2-block radius in Philadelphia.

I am so fortunate to have great, caring friends here in Philadelphia--some of whom I've met over my past 3 years here, some Pittsburgh transplants who I've known for more than a decade, and many whom I've met since I fortuitously moved into The Drake a year and a half ago. Everyone is reaching out and offering their support-from grocery shopping and cleaning my apartment to beauty treatments and relaxing dinners at one of the cozy restaurants by my building.

Anticipation

I've known for about 2 years that it would be likely that some time within the next 20 or so years I could have an autoimmune disease, and compared to how things have turned out, my little bit of early stage chronic kidney disease was like a pimple with a fantastic benefit—it kept me skinny.

I thought when I got my diagnosis of psoriasis a couple months ago, which as far as autoimmune diseases go and how it's affected me has been mild and not a huge inconvenience, the picture was complete.

The complete array of autoimmune diseases causing the transverse myelitis won't be diagnosed until Friday at the earliest when my final test results come back, or it could take years. But the big hurdle now is recovering from the transverse myelitis. I need to keep practicing positive thinking, but it's not coming to me as naturally as usual.

Doctor’s…and Mother’s Orders

I'm supposed to get a lot of rest (which is against my nature and even harder to do on steroids), avoid sick people, reduce my stress, and in the brilliant words or Dr. Schwartzmann (NOT my mother), have sex and vodka.

I like him.

Marci has also offered her intercontinental companionship for my wine-drinking therapy. And I thought I'd have to do it all on my own. Any other takers?

I'm working from home most days and my coworkers have been altruistic with rides to and from the office on the days that I go in. The two major drawbacks to my inability to travel right now are that I can't fly to Pittsburgh to meet my niece Lila Kai who was born this week and I'm not aloud[sic] (I’m pointing this out to demonstrate the cognitive challenges of transverse myelitis. As a writer and immaculate proofreader, I knew this wasn’t right, but I couldn’t connect my synapses to find the grammatically correct fix) to take my two-week solo Christmas through New Years Day Ecuador adventure.

I'm scared about the likelihood of total recovery, but I also (think I ) know that if anyone can do it, I can. I am a direct descendant of survivors of all kinds, and I have really high good cholesterol, so I should be good to go. And if I don't recover completely with the steroid treatment (I have about 3 more weeks), there's another treatment called plasmapharesis, which is a 1-2 week plasma transplant that will give me all new antibodies and could do the trick. My mom is also working on getting me an appointment at Johns Hopkins, which has the only transverse myelitis research center in the world.

Now Let’s Make a Difference?

Once I'm stronger, I plan to start advocating for other people with transverse myelitis (only 1300 people a year globally are diagnosed with this, and only about 30,000 people in the world have it). But for now, it's that hackneyed but oh-so relevant expression, one day at a time. (11.18.08 Ammendment: One moment at a time.)

I'm very lucky, and I need to remember this every day. One more week without treatment and I could have been paralyzed, as 50% of people with TM become, which is when most are first diagnosed.

AND on top of that…

I'm not the woman walking down 17th street cradling her bunny rabbit with a green bow around it's neck…I don't have a yappy republican Jersey-girl voice…I can afford to practice retail therapy (liberally)…and of course so many more meaningful things like having who I can only know to be the best family and friends in the world.

So thanks for giving me something to do while I can't sleep and thanks for being there.

xo,
Melanie

NOTE: This was is a slight revision of the first email I sent to friends and family after my first hospital stay for Transverse Myelitis.

Melanie. Awe-spire-ing blog. As I too live with TM... yes im one of those 30,000. I never had a full recovery. Everyday is different. Doesnt trying to walk near or to get by people tweak your brain out thinking of all the variables like how to move your legs, what does this person think about my walking skills and how to stop that dreaded foot turning inward!!! If you want to keep in touch as a pen pal of this such writting just ask me what my email is :) Your not alone. Sincerely annonymous until i know if you would like to exchange emails Im a 29 yr. Old male

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Appreciating the persistence you put into your website and detailed information you provide. It's nice to come across a blog every once in a while that isn't the same old rehashed information. Fantastic read! I've saved your site and I'm adding your RSS feeds to my Google account.

If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (http://www.facebook.com/inbox/?ref=mb#/group.php?gid=44446668472), a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.

In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.

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Want to know more?

The following are (incomplete) lists of resources, news, and groups that relate mostly to Transverse Myelitis, but also other neurological, autoimmune, and rare diseases, as well as spinal chord injuries, and people with disabilities.